Michael Aidan’s Family

Parents: Carla and AndyHometown: Greencastle, Indiana
Diagnosed at 16 weeks, carried to term, lived a few days

Michael Aidan’s Story

“The third night in the hospital was the best and the worst. It was our only time of being totally alone with our baby, and we just turned the lights down low, and had the sweetest lullabies playing quietly, while we talked to him and rocked him. He seemed to be doing so well. We were in love.”

“Then later that night, soon after my sister Sherrill came back for her ‘shift’, around midnight, like the other nights, Michael had what I guessed was an apnea spell – I really didn’t know what one was at the time. But this time it was a lot worse. He turned very deep purple, and then before our eyes that color drained away to a white color – I have heard that is called mottled. He wasn’t breathing, and his heart rate was almost nothing, if anything. I had just gotten off the phone that evening with my 4 year old, and told him we were bringing Michael home the next day. My sister and I just watched as my husband held him and rubbed his back….well, we didn’t really watch him; we were crying so hard we could barely see. I got down on my knees and begged God to just give us one more day. I knew I couldn’t have a life time, but I could not go home without him after saying that to Daniel. We were all sobbing and the nurse went to get the doctors, but they didn’t come. The nurse asked if we wanted to put him on a ventilator, as that was the only other thing we could do; then she left the room.”

“We sat rocking him and saying goodbye and crying. Slowly he started to gain color and before long, he became very alert: more so than at any other time up to that point. He had not been able to suck yet, and we had been using a feeding tube through his nose. But now he was moving his arms all around and opening both eyes and making normal hungry baby noises, so, in shock, we just started putting formula on a pacifier and letting him suck it off. My milk had not come in yet, but he was actually rooting, so we put him to my breast and he was nursing!!! My husband just dripped formula down my skin so it would run into his mouth. We couldn’t believe what we were seeing!! The nurse walked in and couldn’t believe it either and told us to just enjoy it! We kept this up for the better part of an hour. No one would have believed us if we hadn’t video taped it! We were in awe as we all felt we were part of a miracle.”

Andy and Carla had first seen a genetic counselor at 11 weeks, when they had a level 2 ultra sound due to her age (40) and the fact that she had been using a category X skin cream when they conceived. Category X means that it is an RX that should NEVER be given to someone intending to conceive. But the u/s looked normal, and they were told that the drug in the cream form had never caused birth defects, so they were relieved. At the last minute, they decided to get a blood test called a first trimester screen. It came back with a 1 in 5 chance of T18. So, at week 14 they had an amnio. It confirmed full T18. “Not compatible with life outside the womb.”

The decision about whether or not to carry to term was an easy one for Carla and Andy. “There was really no question for us. As Christians, we feel that life and death are in God’s hands alone. We had taken it into our own hands as teenagers and we were not going to do that again. We also wanted the other kids to know that we value all life, that we do not toss you out if you are less than perfect. And, we wanted to give God the chance to give us a miracle, if that was His will.”

After getting the diagnosis, Carla called her mom that night, and emailed 2 very close friends and asked them not to contact her for a while because her emotions were whirling. She let them tell others for them. She told her best friend the next day. Her friend waited until Carla was ready, then she told others. Her support was invaluable. And they told their minister about a month later. He got the word out to much of their church family.

They also told their 4-year-old son that night, when he asked why she was crying. “I told him that the doctors said we were not going to be able to keep our baby after all. That he was sick and that he was very special, so God was going to want him back right away. Later, through research of one kind or another, I found that these are the exact wrong things to tell a young child, but I didn’t know any better. We waited until closer to the delivery to tell my step kids, as they were in college at the time and for our own reasons we felt it was best to wait.”

After the diagnosis, the pregnancy went along very routinely. Carla was scheduled for a c-section at week 39. The doctor wanted to do it at 38 weeks, but Carla wanted to give him more time to grow, more like 40, so they compromised on 39 weeks. “I still wish I had insisted on waiting longer.”

During the pregnancy, they spoke with their bereavement counselor and a neonatologist about what comfort care meant, and it seemed to be different for everyone. They realized that until the baby was born, and they knew what the particulars were, there was not much they could carve in stone. But they knew that they didn’t want him to suffer, or be hungry. And if at all possible, they hoped to have him with them.

Carla decided to make as many memories during the pregnancy as she could. “While I was carrying Michael, I was trying to decide how I could afford photos at the hospital and still get maternity pictures taken. My friends all rallied together and gave us enough money to get whatever pictures we wanted! So we went to my cousin, Melinda, who is an amazing photographer and had ‘family’ photos taken. The portraits not only turned something scary and sad into something beautiful, but they also remind me every time I see them of my precious friendships. God never said it would be easy, He only said I wouldn’t go alone.”

“Many of our closest friends and relatives came to the hospital to await his arrival. Many more were at our church and several other churches, participating in prayer vigils all afternoon long. My cousin Melinda is a professional photographer so we asked her to come and get whatever pictures we may have time to take. The hospital was very accommodating with this request and allowed her access to almost all of the process. They must have thought we had our own paparazzi! The mood was very jovial in the hospital room while we endured delays, then they wheeled me away to the OR. That is when it got scary for me.” “Michael was delivered, and immediately turned blue. He had a very weak cry, like a kitten. I asked the neonatologist what we do now, because he was just lying there, and no one seemed to be doing anything, except some blow by oxygen. The doctor just said we had to wait and see. That was terrifying. They wrapped him up and said ‘hand him to his mother. Give him to his mother, and get the photographer in here, quick.’ No one thought he was going to make it out of the operating room. But he did, and the first thought I had as I held him, was how sad I was for the mothers who didn’t get the chance to hold their babies alive. Suddenly, the last six months had been worth it, as hard as they were.”

Once he was born, no one on staff ever told them what they were dealing with; no heart scans were done, no real testing of any sort. They just listened to his heart and lungs and said that his lungs were crackly. Carla and Andy didn’t know what that meant. Carla recalls, “He was born on Tuesday, and on Thursday I finally had a conference with the team and told them that I felt like I was being asked to make life and death choices for my son without any clue as to what I was dealing with. They said his lungs were wet, that he didn’t seem strong enough to cry and help clear them up. They said they could take him in for tests, and he may die during that time. We had to decide what we wanted.”

“I finally remembered that the only doctor I had spoken to who was the least bit positive had said he was going to come in when the baby was born, but I had forgotten to tell him the date of the c-section; he only knew the expected due date. Once I realized this, and someone contacted him, he was there within an hour. He spoke with us, and evaluated Michael. He said he could hear a small heart murmur, and his lungs were wet. He told us he would work with us, as far as we wanted to go. We just had to decide what was best for our family in view of our values. He suggested we come in to see him in three weeks.”

“We felt so relieved to talk to him, but it was too late for Michael. We lost him the next night. Just after talking to that doctor, though, a nurse took me down to the nicu to see one more time what the ventilators were like, among other things. I wasn’t so upset by the medical procedures, but seeing some babies lying there just crying with no one with them made up my mind. I went back to my husband and told him we were doing the right thing. Neither of us could bear to think that he might die without one of us holding him, so we just waited out the end taking the best care of him we could and trying to memorize him.”

Michael’s memorial service was an important step in their healing. “I struggled with the sadness of having to plan a memorial service for a baby I was still carrying, but in the end, the time we had to plan was one of the greatest gifts we received. The service had a power point of many of his pictures, and even clips of brother Daniel singing to him as he held him. We both planned it so as to have the least amount of regrets after it was over. We honored him, and God, and our friends and family who helped us through the long, hard process. You really can’t plan it all before hand, because you have no idea how long you will have your baby, or what you will feel about him, so we just had the basics in place.”

Several songs were significant in Carla’s journey as well. “The songs I sang during the pregnancy, before we found out the diagnosis, and after, were very important to me, so we played several of them at the funeral. “I can only imagine”, by Mercy Me, was performed by a good friend of ours and was just beautiful. It is such a powerful and hopeful song. We ended the service with it.”

“We gave him the middle name of Aidan because of one of our favorite songs by Rich Mullens, “Let Mercy Lead”, and even though it talks about growing up to be a man, the other words were so close to what we prayed for him before he was diagnosed that we could not leave it out of the service. We wanted everyone to know why we had chosen that name. It speak of how a parent’s love can only take you so far, and then you’ll need something more to guide you. Love and Mercy are those things that lead to peace and the face of God. It is a beautiful song.”

”I also read a ton of books while pregnant and after losing Michael, but the most helpful was called “Waiting with Gabriel”. It takes you through all the emotions of planning to lose your baby. I gave it to three or four family and friends and after reading it they seemed to have a better understanding of what I was going through and became my strongest supporters.”

“Plan to make as many memories as you can: during the pregnancy, birth, life, loss. All of it. It goes by so quickly, and then that is the only way, some days, that you can see that it all really happened, that your baby was real. Definitely get the maternity photos; you may not like them right now, but you will cherish them later. And do not be afraid to ask for help, or at least learn to let others help you. In their position, you know you would want to do ‘something’ to help and just don’t know how. If someone offers to do laundry, make calls, baby-sit, let them.”

“I am most thankful that we did not lose Michael before he was born, we got to spend a few days with him. I am also thankful for the extra day God gave us so we could take him home. And I am thankful for all of the people who stood by us during the long months before his birth, and during this process of giving him up. My mom, my sisters, Terri and Sherrill, and my girlfriend, Amanda, cried with me, buffered me from the rest of the world and did anything they could think of to make it easier on us. And they loved our baby with us. How can we ask for more?”

Disclaimer: The content of this page does not reflect the views of the Trisomy 18 Foundation. The Trisomy 18 Foundation offers this space to parents as part of the Support Program. Parents have control over how they tell their child's story as well as which pictures they feel comfortable sharing with the Community.